Background

Traditionally, individuals with disabilities
have relied on public institutions and non-profit agencies to provide the
organized development, coordination and management of direct support services.
However, many consumers are finding that traditional services are not flexible
or responsive enough to meet their needs. Some consumers have expressed a strong
desire to be: more directly involved in day-to-day decision-making and in the
management and direction of the services that affect their lives.

Historical Context

Recent advances in individualized funding
and self-managed care have brought the objectives of self-direction and
flexibility within reach; however, some of the consumers involved in these
projects have encountered difficulties with the challenges of staff recruitment
and training, payroll and bookkeeping, planning, management and safeguarding of
services.These experiences have
highlighted the need for organized assistance and facilitation, which can help
users manage these resources and which can facilitate the development of
relevant services and support infrastructures in local communities.

About fifteen years ago, 'Centers for
independent Living' (CILs) were developed to assist adults with physical
disabilities who wanted to take control of their personal care attendant (PCA)
services, equipment and transportation supports. CILs provided the training and
support that allowed consumers to become more effective managers and employers.
CIL services have frequently included education, peer counseling assistance in
developing individual service plans, and assistance in recruiting, training and
managing PCA staff.One
characteristic of CILs has been the dominant role that consumers play in governance.

However, in addition to the direct care
issues addressed by CILs, some consumers and families express:

·the need for the development and maintenance of strong personal
social support networks

·the need for assistance with some aspects of
decision-making

·the value of a ‘capacity-based'
‘community-building’ approach to life planning and service development

Some attempts to empower consumers through
'independent planning' service models still rely on traditional agency
structures to provide the necessary hard services, and have little or no
capacity to develop new resources. 'Lifetime advocacy networks' and 'circles of
friends' provide some important safeguards and supportive personal
relationships, but may not be in a position to create necessary support and
service infrastructures in the community.

In Manitoba, consumer-directed service
cooperatives provide direct services, but retain the authority and
responsibility typically associated with non-profit provider agencies: personal
care attendants are employed by the cooperative, rather than by the individuals
served, and responsibility and accountability remain with the cooperative,
rather than with the consumers.

In British Columbia, Vela Housing's
exemplary role in developing and supporting 'microboards' constitutes an
important advance in the management of individualized funds, but access to
designated funding requires the members of a support network to form a legally
constituted society and control over resources still remains at arms-length from
the primary consumer.

Consumer-directed cooperatives have the
advantage of being completely controlled by consumer-members. Cooperatives may
invite the advice and assistance of non-members, but ultimately, control and
governance remains in the hands of the people served

Separation of Housing and Service Functions

One critical direction is to separate the
structures that provide housing from the structures that provide direct supports
(attendant care services) or that provide 'second level' supports as outlined in
the following proposal.

Ideally, housing should be obtained through normative mechanisms
of home ownership, cooperative housing or ordinary rent. If organized 'social
housing' is the only available option, the organizations that provide housing
can (and in our opinion, should) be organized as consumer-directed cooperatives.

Direct supports should be provided through a process of
individualized funding and directly controlled by consumers, backed up by CILs
or second-level support services.Second
level supports may also be organized as consumer controlled cooperatives, as
described below.

Three types of Consumer-Directed Cooperatives

Consumer-controlled housing cooperatives

First-level service cooperatives provide
direct services under the direction and governance of the people served,
however, individualized funding services, directly controlled by individual
consumers, is seen as a more adaptive solution.In an individualized funding model the individual consumer is in direct
control of staffing and service provision on a day-to-day basis.

Second-level support cooperatives provide
the supports which individuals may require to make the best possible use of
individualized direct support services

If individualized funding is not seen as a
current possibility, a first-level consumer-controlled service cooperative is a
desirable fallback option.

Why a Cooperative Model of Organization?

In contrast to traditional agency
structures, cooperatives are entirely governed by their consumer members. In a
service cooperative, every individual served becomes a member of the
cooperative. In the current proposal children with disabilities and adults who
face ex2ensive communication or decision-making challenges would be able to
share a joint membership with family members or other designated
representatives.

The Board of Directors is composed entirely
of consumer/members of the cooperative and is democratically elec2ed by the
general membership. The board may employ a general manager or executive
director, who in turn may employ subsidiary staff. Alternatively, a cooperative
board may contract for management and technical services. In every case, the
general membership retains the ultimate authority for direction and control of
the cooperative as a whole the individuals served retain authority and control
over the conduct of their own service arrangements.

All cooperatives are organized on the basis
of a historical set of principles that support members in active and informed
participation. The core principles (known as the Rochedale principles) are:

Open and voluntary membership (membership is
not restricted on the basis of race, etc.)

Authority vested in the general membership
and governing boards made up of members.

Prairie Housing, l'Avenir and Second-Level Community
Cooperatives

The following material on Prairie Housing
and 1’Avenir Community cooperatives are excerpted with minor editing from
Nicola Schaeffer's Book Yes! She Knows She's Here, copyright 1997, Inclusion
Press. Toronto. Nicola is a parent activist who lives in Winnipeg, Manitoba

Prairie Housing Co-operative

One ray of hope for [my daughter] Catherine
was another of the initiatives of the early '80s designed to benefits people
with disabilities. This was the founding, in 1982, of a housing coop in Winnipeg
that incorporated a small percentage of people with physical or mental
disabilities. It was named Prairie Housing Cooperative and was dreamed up by
David and Faye Wetherow. As part of their role with ACL Winnipeg, they made
themselves responsible for inventing new ways for people with disabilities to
lead good, well-supported lives. Although she didn't become a member until four
years later, David says that Catherine was one of the two people who inspired
it. "If it won't work for Cath, I'm not interested in pursuing it" he
said

Cooperative (working together) housing has
existed for decades in many countries but is a relatively new concept in
Canada... The idea of any co-op is that the members, who buy a membership for an
nominal sum, refundable if they leave, collectively rent or buy the house, the
factory, the store, or whatever it maybe and are collectively responsible for
running it. The control and responsibility are democratic - one member, one vote
- but the usual practice is for the members to elect a Board of Directors from
among themselves. This board looks after the financial and general management of
the coop... but the fundamental issues are voted on by the general membership.

Sometimes, if the organization gets too big
or time-consuming for the Board to run, a manager is hired but the policy and
direction of the co-op always remains in the Board’s hands.The Board, in turn, is always responsible to the general membership. As
David says in an article about co-op housing in his book The Whole Community
Catalogue,

One of the continuing lessons for members in
all kinds of co-ops is that there is no 'them. Ultimately all action, or
inaction, and all responsibility is 'ours.

David and I often found ourselves at the:
same meetings to do with Project Welcome Home. After one of them, I unburdened
myself to him concerning Cath's future and where she'd eventually live. He
suggested that I start doing what I'd been encouraging other parents to do for
their children when I'd spent time with them in the course of Welcome Home: dream,
he said, dream about the best possible living arrangement for her. There were
many factors in Cath's favour at the moment, he added.One, Prairie Housing Co-op, with invaluable assistance ham a
fellow named Al Charr in the Government’s Department of Cooperative
Development was running smoothly and now had several clusters of housing similar
to the one near us, so Cath could link into the co-op.... Two, Welcome Home had
for some time been providing funding for Winnipeg residents who needed to move
away hem their parental homes or who were in danger of being institutionalized
due to family problems. Three, the government was making renovation grants
available to groups of people, any of whom had a disability, who wanted to set
up house together.

Serious Dreaming

I knew all this, of course, because as well
as being involved in many aspects of Welcome Home I was also a Board member of
ACL Winnipeg and had consequently been in on Prairie Housing Coop since its
inception. What David said made sense. I should start dreaming for Catherine. I
was reluctant at first to take him up on the suggestion however: I think I saw
it as taking advantage of being part of the system. But then he added that the
money wouldn't last much longer so it might be now or never. I went home and
embarked on some serious dreaming....

A Place of Her Own

Like other adults with a disability in
Canada, when Catharine turned eighteen she started receiving a social allowance
cheque which in theory covered her living expenses.... If she were eventually to
move into her own place, however, this income would barely cover her rent and
food, let alone her care.

Under Welcome Home, funding was to be
provided to assist Catherine and others with severe disabilities in new living
arrangements on an ongoing basis. It had to go through a Government-approved
agency and as I've already indicated, none existed. As with Prairie Housing it
was David and Faye, having observed that part of ACL Winnipeg's mandate was to
provide creative alternatives for people with Cath's kinds of needs, who
invented the necessary agency.

We called it l'Avenir Community
Co-Operative, l'Avenir being the French word for 'the future, that which is to
come.' The co-op started in a tiny way in 1983 around Catherine and a young man
named Arnold who had had to spend years in the big institution and whose family
desperately wanted him out. As anyone who has started a new organization knows,
it takes a huge amount of planning before anything much happens. So it was with
l'Avenir but when it came time for Arnold and Catherine and several other people
to move to new abodes everything was in place, including our first general
manager, Cindy. Cindy and her husband had recently spent two years with CUSO
(Canadian University Service Overseas) in Africa and Cindy had experience
working with people who had complex disabilities. We couldn't have found a
better person to help l'Avenir grow once David and Faye had brought it into
being – calm and capable, she was also clever at making good use of limited
resources a skill she'd picked up in Africa.

Very often, in fact usually, a person with a
disability has his or her housing and other needs met by a single agency. This
is dangerous; I've known several people who have been booted out of an agency
because of "difficult" i.e. probably angry and frustrated behaviour
and have lost both their housing and service provider at once. David and Faye
recognized this and intentionally created Prairie Housing Co-op and l'Avenir as
separate entities. To offer my daughter once again as an example, this means
that if for some reason she leaves Prairie Housing and lives in other
accommodation she'll still be a member of l'Avenir and have help with other
aspects of her life. Conversely, if she finds a better support agency than
l'Avenir she can still live in her house with Prairie Housing.

L'Avenir Community Cooperative

The l'Avenir Community Cooperatives' stated
purpose is: "to provide the supports which will enable people with mental
and/or physical disabilities to live with dignity, fulfillment and security. Our
goals are:

to help members create for themselves meaningful lifestyles that
are focused on relationships

to respond creatively to the need and wishes
of members

to enable: our members to explore the risks
and rewards of life's full spectrum

to support families by addressing their
concerns for the lifelong needs of their sons and daughters

We are:

a small community of members, their families and networks (friends
and support staff living throughout Winnipeg

an agency that supports those members in
their homes and places of work and leisure

an agency committed to responding to its
members' different and evolving needs

a co-op in which the direction of the agency
is determined by the people served

an agency committed to supporting people
with significant and challenging disabilities

staff who share the lives and homes of its
members

staff who provide assistance for the members
and also facilitate friendships for the members

not buildings or property, but people

Most of the points are self-explanatory; I
hope they are, anyway, since we spent a long weekendconcocting the brochure from which they
come. Some I could elaborate upon however. "To help members create
meaningful lifestyles that are focused on relationships" for instance. Good
governments, good agencies, good staff all tend by their nature to come and go,
so one has to rely ultimately not on these official entities but on friends. I
can confidently say that should I disappear right now, Catherine has a network
of real friends who would look out for her. We try to make this a reality for
all our members.

"An agency that supports those members
in their homes and places of work and leisure" and "a co-op in which
the direction of the agency is determined by the people served" These, I
think are the aspects of our agency that make l'Avenir unusual.

First, people with disabilities, especially
those whose disabilities are complex, often have staff who come in on a shift
basis. We feel that a home shared by the member and primary support staff is
more likely to be what one might call a real home. We may not always follow this
direction but at the moment it seems to work for at least some of our members.
Second, most similar agencies have a couple of parents on the Board but the
direction often stems from people who are simply interested.Our Board, on the other hand consists almost entirely of the
members themselves, plus family members or close friends.

To continue being technical for a moment
(I’m constantly being asked how l'Avenir works so I mav as well give at least
the framework), the number of people served by our agency has fluctuated over
the years but we've found that if we try to assist more than twenty people we're
in danger of burning out our Manager. The salaries or our Manager and half-time
Assistant Manager come from a percentage of the members' social allowance. That
is, Cath uses part of her income to pay l'Avenir to manage the supports and
services she needs. We usually have about sixty people on the payroll, some who
live with and are responsible to our members and others who work for them on a
part time or respite basis.

Some additional models:

The Micro-Board Project

Following Project Welcome Home (which
required an 'agency' base for delivering services) and the associated
development of l'Avenir Cooperative, the Manitoba Government made funding
available to small groups of friends and family members who would agree to
incorporate on a not-for-profit basis and manage services on behalf of
individuals with disabilities.

In response to this opportunity, we created an
organizational pattern that we termed 'micro-boards', and provided what we
called the 'utility' supports to help them develop and operate. Subsequently,
Linda Perry, of the Vela Microboard
Association in British Columbia, took up the
micro-board concept and developed the agency's capacity to support the
development and continuing operation of a large number of micro-boards
throughout the Province. As of this date, Vela has developed and continues to
support, over ninety independent micro-boards, each of which manages service on
behalf of a single individual with disabilities.

Interestingly, one of the first micro-boards
in Manitoba involved two of the early consumer-members of l'Avenir Cooperative,
who were in a position to change 'agency' auspices because of the strength of
the network of family members and friends which had been developed since
l'Avenir services allowed them to move to the community following decades of
institutionalization.

In the Company of Friends

A few years after the Manitoba government
made payments available to micro-boards, they entered into an experimental program
called In the Company of Friends, which allowed funding to flow directly to
individuals with disabilities on the condition that a group of friends and
family members would agree to informally assist the individual to manage their
resources.

The Company of Friends project enabled a number people to leave
institutions, to manage their own funds, and to direct their own services - with
the support of an unincorporated group of friends and family members. One of the
difficulties (as we saw it) with the Company of Friends project was the lack of
financing for the kind of 'utility' or ‘second-level` development and support
work that Vela Housing had created in British Columbia.

The Second-Level Support Cooperative - A
Consumer-Directed Cooperative Designed to Facilitate Consumer Control and
Management of Individualized Funding and Support Services

Initial work has begun with a group of
families in the Comox Valley (Vancouver Island, BC) to create a consumer and
family cooperative that would provide the supports that would enable individuals
and families to receive and manage direct funding from the government.

The second-level cooperative is intended
assist individuals to:

plan holistically, effectively and
creatively for their long-range futures

develop needed service and 'utility'
infrastructures in the community; and

balance the contributions of family.
community and the service system.

Although this design focuses on the role
that the second-level cooperative can play in the provision and management of
individualized funding and self-directed services, the cooperative has the
potential to play a very significant role in supporting individuals for whom
direct service funding is not a current option. Holistic future planning,
network development, consumer education, and access to reliable sources of
staffing are likely to have a positive impact even under traditional service
structures.

Relationship of the Second-Level Cooperative to Other
Community and Service Elements

The second-level consumer-directed
cooperative is designed assist the individual consumer to work in cooperation
with the broader community, organized personal support networks, government and
'community utilities' which provide generic services such as payroll, staff
recruitment and staff training. Because of the presence of other elements, each
element can perform its proper role without creating internal role conflicts of
conflicts of interest.Together,
the elements create multiple interlocking levels of safeguards for the
individual, and a high degree of public accountability.

The Role of Consumers: Day
to day service coordination (scheduling contacting back-up staff, responding to
emerging changes in plans due to illness, etc.) is the responsibility of the
individual consumer, however, the consumer has the option of purchasing
coordinating services from a qualified individual or a generic organization
which may have developed a specialized practice in this area.

The Role of Community Members:
One of the primary functions of the cooperative will be to engage community
members to offer a personal support network to the individual with a disability
on an ongoing basis. Community members can play an informal but extremely
powerful role in providing direct relationships, connections to other
relationships, connections to community activities. and informal monitoring.
Discussions with social workers and traditional provider agencies reveals that
all providers recognize the importance of this type of network development, but
that this work often ends up ‘on the back burner' in relation other
requirements of the service role.

The Role of Community Utilities:
Whenever possible, existing businesses or community organizations can be
encouraged to develop the 'community utilities' which will assist families in
issues related to staffing, payroll, and personnel management. For example, we
envision encouraging the local community college to develop a specialty in
training staff for personal care roles; encouraging generic employment agencies
to develop a specialty practice in recruiting and screening personal care
attendants, and encouraging temporary employment agencies to develop a
specialized cadre of screened and trained caregiving staff who can be employed
on short notice.

The Role of Government:
In general, the Government role remains similar to what is currently provided
although some ‘social worker' and 'service coordinator' functions will be
incorporated into (or shared with) the cooperative. For example, social workers
will be invited to participate as valued consultants and advisors in the
individual planning process; however, the planning process is likely to address
issues which are beyond the scope of the of the traditional Individual Service
Plan.

The Role of the Cooperative:
Staff members employed by or working on contract with the cooperative will
provide specialized support in organizing and coordinating cooperative
activities educating members, facilitating long-range plans for individual
members, developing elements of the 'community utility' infrastructure,
recruiting and mobilizing personal social support networks and assisting
families to negotiate service agreements with government. The cooperative will
not assume the authoritative role typically associated with provider agencies-it
is designed specifically to empower direct consumers to assume these roles.

The Role of the Traditional Service
System: Although the cooperative operates separately
from the traditional provider agency system it maintains a respectful working
relationship with the system. In general, the cooperative will work towards the
development of generic support utilities, because this strategy increases the
involvement and understanding of many members of the community-at-large. In some
cases, however, traditional provider agencies might be excellent sources for
organizing specific community utility services, such as staff recruiting and
screening.

The
overall management functions that are ordinarily associated with provider
agencies are incorporated into other elements in this scheme. As discussed
above, the traditional agency role in recruiting screening and training staff
may be performed by generic employment agencies and/or educational institutions
that are willing to develop a specialized practice. Supervising staff (typically
an agency role) is performed by the /or the individual served.Administrative support services such as payroll and accounting may be
performed by generic organizations such as Comcheq, bank-based payroll services
and generic bookkeeping and accounting services.

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